World Turned Upside Down

Having had our world turned upside down, there are snippets of good news that we cling to. Every card, text and email we receive is a source of strength for us. We are so grateful for all the prayers and well wishes that reach us from across the globe. The surgery on Monday was the first hurdle, and considering the list of risks that we had to accept prior to Monday, it went better than we could have ever imagined. They were able to remove more of the tumour than they had initially hoped. The next phase was post operative recovery and assessment of his basic functioning. He is able to breath, talk, drink, and eat normally without the possible complications of being tube fed and having a tracheostomy. His move from Paediatric High Dependency back to Robin's Ward went down well with him. Skye is clearly still in discomfort, but he has made really good progress considering how invasive the surgery was, he has shared a laugh with us and although his co-ordination is rudimentary as a result of the proximity of the tumour to the cerebellum, he is making good progress.


His left hand side is much weaker and he is reluctant to use his left arm and hand, but we are coaxing him to be more active. He has been on a couple of trips downstairs in a wheelchair, one of which ended up in a pool of chocolate milkshake vomit. This is a current concern in that we have to keep an eye on intracranial pressure, and hope that there is no bleeding or increase in fluid production. He took his first few steps yesterday with underarm support, thanks to Sarah 'slave driver favourite nurse' Williams, and Mummy. He needs a great deal of support but we are trying to get the co-ordination going again. Histology - late on Friday evening one of the neurosurgeons popped in to let us know that his tumour has been identified as a Medulloblastoma. It is malignant and aggressive. The prognosis varies depending on a number of factors. Working against him is the fact that it has metastasised to other parts of the brain and spinal cord. Cells are therefore moving within the Cerebral Spinal Fluid. Tomorrow we meet with Oncology to discuss the treatment protocols but initial indications are that they will waste no time and chemotherapy is likely to start sooner than later. To have Skye with us this week post-op has been a real privilege, we have no idea what the future holds but what is absolutely sure is that we are ready to fight for him however hard that might be in coming weeks, months and ?, years. We will update you, when we have an opportunity to do so. Jesse is coping admirably, and we shared a lovely moment when Jesse joined Skye on his bed, and Skye beamed from ear to ear.